Colonoscopies save lives.

Here is a picture of my ostomy supplies I use every Monday to change my appliance (the adhesive bag on my abdomen). Believe me, you’d rather have a colonoscopy than an ostomy.

The new age to get your first colonoscopy has been lowered to 45 from 50. Since colorectal cancer is on the rise in young people --especially in females--I vote the age threshold be lowered to 40. Studies don't yet show why colorectal cancer (CRC) is infecting younger patients, but if you have colon/rectal cancer in your family at all, please consider mentioning it to your doctor and advocating for a colonoscopy. You might have to fight for your insurance to cover it, you might have to wait several months for an appointment, and the bowel prep is the worst (but not as bad as actually having cancer, ostomy life, and chemo, so I guess it's not actually all that bad).

Consider asking for a colonoscopy even if it doesn't run in your family--especially if you are in your late 30s or early 40s . CRC doesn't have many symptoms and often is not painful. That's why it's the silent killer. It can grow without being detected for years, until that first colonoscopy when it may be too late. It might be Stage 4. I don't mean to scare anyone or make this a fear-mongering post. But CRC is preventable with early detection, so please think about getting a colonoscopy.

My Pop-pop (maternal grandfather) was diagnosed with colon cancer at age 29. Between surgeries, hospital stays, chemo, and the grace of God he lived to be 83 and died of pancreatic cancer-- unrelated to the CRC that he fought all his life. Pop-pop had Lynch Syndrome, a gene mutation that causes CRC and other types of cancer.

However, since my mom tested negative for the Lynch Syndrome gene, my cancer was completely random and just as likely to affect me as anyone else walking around. In fact, my tumor tested negative for Lynch Syndrome. I do have a genetic testing appointment coming up in order to see if there are other mutations I might have that would be helpful for my children to know about.

****Note: if TMI (too much information) makes you squeamish, or if you have a weaker constitution about health issues, you may want to stop reading and go schedule your colonoscopy. ****
****Medical friends: I’m sure I will use the wrong term or not describe something quite accurately. Please feel free to text me corrections if you like. We’ll both be patient with one another. ****

My symptoms were bright, red, painless blood in my stool. It was minimal, and I, surprisingly, did not obsess about it. My OCD obsessions tend more along religious/moral lines instead of health obsessions. After a four months (bear with us, men, as we women often experience bleeding), I mentioned it to my doctor.

He, as I also thought, said it was probably hemorrhoids, even after doing an external and a small internal exam.  I tried the cream. After a couple of months (again monthly bleeding gets in the way of knowing exactly what’s happening), I went back to my doctor who referred me to a colorectal specialist.

Dr. M also performed an external and more probing internal exam and saw nothing amiss. He said we are all born with 3 God-given internal hemorrhoids (varicose veins) that can sometimes swell and bleed. Just to be sure nothing was wrong, he ordered a precautionary colonoscopy, but told me we would likely find that I probably needed to eat more fiber.

I felt silly going to the specialist. I felt wasteful for having what I thought was an unnecessary test. I felt ashamed of my OCD as if doctors look down their noses at us people who always seem a little too anxious about health-related things. Thankfully I went ahead with the colonoscopy, at Stephen’s insistence.

August 29, 2024 was the day of my colonoscopy. I had a horrible night of bowel prep. I opted to take the SuTab pills because swallowing pills sounded a lot easier to me than drinking a disgusting drink.

I was wrong.

Friends, do the drink, not the pills if you can. I took 12 SuTab pills over 20 minutes at 9pm and then 12 more pills at 2am. I took the first batch and my bowels began to empty. However, when I tried to rush through 12 pills on an empty stomach in the middle of the night, I promptly vomited them all up! There I was, sick as a dog, cleaning up my own vomit while worrying that it might have ruined everything, and I would have to do all this awful bowel prep later.

The morning of the 29th, I told my doctor what had happened, and it thankfully did not stop the procedure. He assured me again that he was 90% sure we would find nothing in my colon, and I would just need to eat more fiber.

Imagine hearing that, and then opening your eyes post-colonoscopy, to see your doctor’s face and hear him kindly, but very directly, say that they found a 5cm mass in my rectum. He said he would want his doctor to be direct, so he was directly telling me that there was no reason to sugar coat it and to say, “We hope it’s not cancer.” In all of his years doing this, this looked definitely like cancer. Of course he had taken a biopsy and we would need to await pathology results.

I was taking the news pretty well because it felt surreal. But, I began to cry when I mentioned my four children. Dr. M assured me that I would make it, even if it meant a permanent ostomy. In the haze of all that was coming at me, it felt like he was saying my two options were death or an amputation. Pretty bleak.

While I do appreciate his candor, it was a lot to take in as I was still heavily medicated. Thankfully, Stephen was by my side and holding my hand through it all. It felt like someone handed me a role in a play,

“Here, Liz, you play the cancer patient.”

“Wait, what? This is real? I don’t know my lines! I don’t know how to have cancer. This feels like I’m just pretending and making a big deal out of nothing. How do I do this?”

One of the main emotions of getting cancer at age 41 “out of the blue,” with minimal/normal symptoms, is the feeling of utter confusion. How did this happen? Why did this happen? Did I cause this? Is this real? Is this even happening? I don’t feel like I have cancer. I'm just me.  I don't want to be the "cancer mom." Maybe I’m just being dramatic? How do we tell the kids? When? How do I tell my family and friends? How can God be good and give me cancer? Is this cancer from God?  Is 41 all the years I’ll get? I didn’t know what to expect.

The other surprising emotion I experienced that day was gratefulness. I know. I know. It sounds like toxic positivity where you are never allowed to be sad, ever. But, I’m just saying it like it was.

Though I’ve had a hidden life--if we’re measuring lives by career, world travel, financial success, social status, fame, or business prowess—my life has been lived mostly in my home.

I’m grateful for my 41 years though. I’ve loved people, and people have loved me. I’ve cared for people as a teacher, care giver, mother, friend, writer, and Bible teacher. I have a husband who is devoted to me and helps me flourish. I have four healthy, beautiful children. I have too many friends to count and about 10 really close friends that I could share anything with. I know my soul is safe with Jesus and this life is not all there is.

Yes, I wish for more years and experiences, and maybe even a career. But if all I get are these 41 years, I’m grateful. As I now know, I can likely expect to have a really bad year and then move on with my life. Two of my friends who have similar stories to mine have both said that they sometimes forget cancer happened to them. I can’t imagine that now, but their experiences give me hope.

One of the toughest things we had to do was wait for the official pathology reports to come back. Stephen and I were living in the AFTER cancer time, while the kids were still living in the BEFORE cancer time. How could we tell them? There would be no going back. How could we change their lives forever in this terrible way? A wise friend suggested we gather the kids in the family room with their favorite blankets and stuffed animals and popcorn.

Unfortunately, the kids thought we were having a movie night, but instead it was a very sad family meeting. They all four responded in their own unique ways to the news. They have struggled, are struggling, will struggle, but they are also doing well and thriving. We see them maturing in good ways.

The next step was to find out the stage of my cancer. Here’s my understanding of the rectal cancer stages:
Stage 1: cancer is in the inner lining of the rectum. This is what the tests showed I had, going into surgery.
Stage 2: cancer has burrowed deep into the lining of the rectum, but has not broken through. This is what had actually happened once surgery made it clear.
Stage 3: cancer has spread to nearby tissue. This is what I had post-surgery since they found cancer cells in 3 out of 22 lymph nodes.
Stage 4: cancer has spread to distant organs. Thankfully, both of my CT scans and my MRI were clear with no spread.

Then, the medical team graded my cancer on three scales T, N, and M.
T is for tumor: my tumor has a grade of 2. That means I have a stage 2 tumor that goes a little deeper than the inner lining of the rectum. My tumor actually measured 3.9cm long and was about 10cm from my opening. This means that my sphincter was saved and reconnected to my upper colon. But, I did lose my entire rectum, so once the ileostomy is reversed, life will not return to normal. I’ll need to learn a new normal with out my holding tank (rectum) in place.
N is for nodes (lymph nodes): my N score is a 1 since I have only 3 lymph nodes involved. These nodes do NOT measure any differently and did not show cancer on the imaging tests, but the microscope reveals more than scans.
M is for metastases (spread to other organs): Best news of all, I have 0 metastases!

Where does T2, N1, M0 put my cancer stage? Technically I have Stage 3a (because 3 or fewer lymph nodes are involved). If I were to have 4 or more lymph nodes involved, that would be Stage 3b and my statistics for recurrence would be a little less encouraging. Cancer is all about statistics for recurrence.

So, that’s a little of what I’ve had to learn and decipher--along with learning to be an ostomate--these past few months. I’m very grateful to be stage 3a and very grateful to be nearly 1/3 of the way through chemo. As my physics-loving husband has said, “12 is a great number of treatments. It’s divisible by so many numbers!” Last time, I was ¼ of the way done, now I’m 1/3, and in a couple of treatments I’ll be half way there.

Enough about me.

Go schedule your colonoscopy!